Triple Negative Stage IV
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That's really helpful information. I'm in Michigan, my Doc had to stop my Chemo Abraxane after my Brain Met, so I was without my Chemo for my Lungs for almost 2 months. I'm currently back in the hospital because I now have Pluerral Effision (fluid around the Lungs) with Cancer in the Fluid. My Doc just put me back on Chemo Oct 15th. Hopefully I'll be able to get my Wind Back and go home. Trying everyday. I Wish Well for your Wife and Family it's a Hard Road.
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Hey Josie, best of luck with the CMF! I have done well on it and hope to continue with it...PET scan in 4 weeks. My next infusion is this Friday.
Like you Kay, I think this is my favorite board. ❤️
Traveling home tomorrow from our trip to North Carolina. Loved seeing the amazing colors of fall!
Julie
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I'm feeling pretty low today. Last Friday I had a stroke. They performed an experimental procedure on me where they removed the clot in my brain and my function was returned to pretty much normal. They think the problem is relate to a malformation in my carotid artery so they want to put a stent in early November.
But yesterday I had a PET/CT and 2 bad things showed up. There is a blood clot in my thigh, where they went up through my femoral artery to get to my brain. Earlier in this week I was diagnosed with phlebitis in my arm where my IVs were from the hospital. So I seem to be clotting all over, probably from the cancer. The other bad thing - I'm no longer NED. There's a lymph node in the middle of my chest that has grown, has an SUV max of 4.2. My oncologist is not sure how to proceed. He and the neurosurgery team think the strokes are a bigger danger to my life right now. I'll be on Plavix for awhile, so chemo might not be an option. He's going to look into radiation.
I feel like I'm falling apart in bits and pieces. I don't like being this unwell and afraid.
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minxie - I'm so sorry, that sounds so frightening and I know it's worse when your waiting for the docs to get a plan together. You'll be in my thoughts this weekend.
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Minxie, that is very frightening and I am very sorry you find yourself in this place. Praying that you find peace and healing and soon. Let us know how you are doing. We're here for you.
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thanks Kaayborg and Sherri. Has anyone here been in this position, with just one lymph node met? How were you treated
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minxie - that's scary when the onc says he doesn't know how to proceed. The stroke may be the bigger danger now but TNBC can grow very quickly (and you were doing so well with it till now). Be sure that your onc is in control of your cancer. It's not secondary. I've had MS for 30 years. It's pretty controlled. But now the onc is afraid to treat me without consulting the neuro, and the neuro is afraid to okay anything. No one wants to take the responsibility since neither knows enough about the other field. I hope they clear up this stroke problem fast so they can fight the cancer.
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minxie- I hope they get a plan of action for you soon. I find the stress less painful with a plan. Let us know, wee are here for you!
Stressed put myself due to recent scare. Onc says the mass compressed in mammo machine and tumors don't compress. So now just waiting for PET on Thursday and meeting with primary onc. If memory serves me right I think most of us have scans coming up! Hopefully all are well this is the board I depend on!
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Minxie I hope you have more info by now - even the beginnings of a plan..I really feel for you and an relate to the falling apart piece by piece.
I also agree with everyone that this board is so very important to me. I come read when I feel overwhelmed or hopeless and I find that the encouragement and the frank discussion of these horrific developments is calming. Knowing that others feel and experience similar issues is comforting. On Nov1 I will find out if CMF is doing anything for me. I am hopeful but I'm struggling with a cold and the efforts to breathe are scary - congestion? clots in my lungs? mets in my lung getting bigger or more? low blood cell counts 1 week post chemo? my cancerous neck lymph mets are more active? (I found out in the summer that my one lung had collapsed almost 70% b/c of accumulated fluids around it - a situation that thankfully resolved itself for now)..Breathlessness is likely explained by a combination of one or more of these factors. I hate, hate, hate how I can no longer be casual about my body which has always been so strong and resilient and trustworthy! - sorry for a rant -
take care - Josie
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I met with a radiation oncologist today. He seemed to be saying he wasn't sure if getting rid of the node would be worth it since more are likely to show up. I was kind of hoping eliminating this one would lessen the chance of it spreading more cancer cells through my body. Because of the location of the node (AP window) it might be too tricky to SBRT. He said traditional radiation might be an option. I really didn't want to go through that again...
I'm not sure what to do. I don't want to wait around while this spreads, but I need to be on Plavix for 3 months which takes chemo options off the table. Very sad and frustrated. Does anyone have any idea how quickly this can spread into something unmanageable?
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Minxie I uunderstand completely. I am a visual thinker and I called my nodes my moldy fan...I just kept asking why don't we remove the fan...I got the same answer that it didn't matter...
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Broken...recurrence...only got 4 months out of taxol...
After 10 taxol infusions my PET was clear. A month ago on my week off from chemo my right breast (the culprit) began to swell, the lump got fuller, my areola was swollen. The next week I had my regular appt. onc. Ordered mammo and ultrasound. ..onc and radiologist said mass compressed and tumors don't compress...I felt better so I opted to wait two weeks for my scheduled PET..the PET was yesterday...taxol stopped working for me after 4 months...I am so upset bbecause I tolerated taxol sooooo well. I am going to go on doxil next. I feel broken and don't know what to do...anyone know anything about doxil? Boards to point me to? Anything?
Broken...I feel like my life is too good to be true. I have a wonderful husband who loves me despite myself, three beautiful children, and a wonderful community. ..I am lucky in so many ways but this just feels really unfair (to quote my 6 year old). I hate this but I just keep thinking, having been a social worker and seeing first hand the sadness and damage some people can inflict upon their children and they get to live...my children and husband are everything to me and everything I do is for them and they get cheated...I know that sounds horrible but it is how I feel in this moment. I try to stay positive but I just can't right now with hot tears streaming down my face I feel so alone and broken. I hate that there is no one to talk to here instead I have to type this and hope someone somewhere will respond with something other than..."I'm sorry."
I apologize for the rant I just don't know what to do...thanks for reading.
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To minixe and nrsteph, I know it's hard when Drs. seem confused about how to proceed or what Illness Superseeds the other. I'm currently on Oxygen and it's set on 5 high as it can go and I'm fighting for every Breath and I need you both to keep Ranting, it's Okay. Ranting to me means that you're Fighting with Anger and Hope. We all need that, this Cancer is Mean, Agressive and Kicking my Ass, but I'm still Fighting, letcontinue to Fight together and when 1 of us gets weak the others get Stronger to hold each other up.
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Steph, as much as these boards are a comfort, I sure do wish Iowa and Ohio weren't so far away and it were possible to meet up and face our fears together. All us sad ladies crying our eyes out and typing away at computer screens...i can't deny it's a blessing but I do so much long for someone in flesh sometimes and I would love to see you. I'm kind of in a blissful state where it is so easy to forget what can change in an instant. Lately, it's been in mind that my smooth ride must be coming to an end soon. No reason to think this but I do tend to make up things. Anyway, I understand that you are so scared. 4 months is not long enough for a treatment. I have to think though that there will be something else that will give you more mileage. This seems to be the case for so many others. Just b/c taxol was 4 mos. doesn't mean everything will be. And as for fairness, it is pretty clear cancer does not care. And sometimes it does entirely feel like it strikes the best people most often. I just can't believe any of it. Not for you or me or anybody. Atrocity!
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Josie I'll be thinking of you on Tuesday. Let us know your results. Do you have to wait long for them?
Minxie I don't know the answer to your question...how long til it spreads. I know it would vary from person to person but that we are the unlucky ones with the speediest kind of cancer. I would ask your doctor your question and also ask what the plan is to make sure things don't get out of control in that time. Will they do an extra scan for your piece of mind?
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Steph - i'm with you. It's not fair - Why me? I've tried CMF, adriamycine and Gemzar with no results. Now I started getting eribulin and I'm praying that this one will do something. Two weeks ago I started having oozing from this tumor. I went to the on-call onc in the hospital and she gave me flagyl and great bandages that controlled the odor and wet but that was just to make me feel better (I could go out in public) but then I went to my onc - She said that was the correct treatment but the oozing would continue unless the eribulin worked!! Well - It stopped!! So maybe the eribulin is working!?!? Well, I'm not getting too excited - Here's why. I've started having very strong pains around my chest. I think it's the bones. It's painful to get out of bed or to roll over. I can walk around but it's painful to reach for things. It's hard putting on/taking off a shirt. I'm applying for cannabis as a pain reliever. But that's not what I need. What I need, is a cure!!
Tomorrow I'm going for a scan. It's my first since the stage IV diagnosis in May. I know things are only worse since then, this is sort of a new baseline.
I don't let anyone know how bad my situation is. I've barely told anyone that I have cancer at all. I've always handled the treatments well (too bad they didn't do anything), so if I talk to the few people who know (close family and a few friends), I really only talk about how I don't get nauseous from the chemo. I can't imagine having to tell my mother, sisters, kids... the truth. What would they say to me? I guess there are people that understand that it's not "nothing". I have no end to the treatments and I keep switching chemos.
enough rambling -thanks for listening
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donnadd- how was the scan?
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I went for the scan yesterday. No results on the spot. I can probably pick up the disc tomorrow when I'm there for chemo but I really won't know how to read it.The report takes a week or two. Doesn't really matter. I can see that things are worse on my own. My hopes now are on the Eribulin that I started 3 weeks ago.The scan won't really compare anything since my last scan was in May and I know none of the chemos since then have worked.
The scan yesterday was crazy. I had a 4:00 appointment. They didn't take me till 7:30!! So I finished everything at 9:30 PM!! And I hadn't eaten since 10 AM!! (six hours before my appointment for the scan) -- Just frustrating.
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Donna- it is so hard when you know what your body is telling you but you have to wait for medical confirmation. I am thinking of you!
Kaay- thank you for your kind words. I hope to get more mileage out of the next drug doxil...I don't see it listed on other profiles so I don't know what to think about it or what to ask. I was crying when she gave me the news so I only remember bits and pieces. I think she said she is giving me doxil so that I will qualify for a trial when it stops working...
Anyone have thoughts or info regarding vitamin d3, metformin, and the copper depletion drug which I won't attempt to spell. I am going to email my onc tomorrow but just wondering if you ladies know anything about these therapies?
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Where did Purple Minion go?
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Donna, I cannot believe how long you had to wait for that! Or that you still have to wait so long for results. I have no idea how to make heads or tails of my scans either...must have the report.
I am also wondering about MaryK87. She hasn't been seen in some time now. I don't like when people disappear.
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Im sorry to be the bearer of bad news nr.steph, but Purple Minion passed away July 17, 2016.
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This makes me so sad. Her time was so short. I cannot stand how quickly things can change with this disease. I can't stand anything about this disease.
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This makes my heart sad. I am with you Kaay...it amazes me the blinders I have put on myself so that I don't see what I know to be there. Thank you Geeper for letting us know.
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I'm with you nrsteph, I can go for days, even weeks, with the blinders on. Then ka-boom, the blinders are off and it all comes back.
Today I'm putting the blinders back on. Just got scan results and good news! All areas show signs of favorable response, even the new bone met that showed up last scan that looked like progression. First time in months I have good news. Spent the morning telling my husband, then mom and sister, everyone close to me. Felt amazing to spread the news that we have stability and maybe peace for two more months until the next scan.
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THIS IS GREAT NEWS Sherri!!!! Awww two months with blinders on, I am totally jealous!!! ENJOY!
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http://www.nature.com/nm/journal/vaop/ncurrent/full/nm.4213.html
Thoughts???
sorry for the onslaught just researching alone is no fun! What's new TN's?
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so many announcements like this lately! We know they won't all pan out, but fingers crossed a few will. Of course my blinders came off long enough to realize I have to last long enough to find out. Hope we all find the treatment that will keep us stable long enough to see the next wave of targeted treatments!
Okay, putting blinders back on now...0 -
So sad to hear about Purple Minion. Those posts bring us back to reality. I pray for her family. There are a few others that I have not seen on this discussion board for several months. Spiritblessing is another.....anyone heard from her?
I have a PET scan next week on Wednesday. Will get results on Friday next week. Donna, not sure why it takes so long for you to get results, something doesn't seem right. I told my ONC I want to receive results within days of scan. She understood and the PET was scheduled so I would receive the results at my usual appointment 2 days after the scan. I guess I am lucky to have an ONC that understands my feelings.
Sherri....AWESOME news! Enjoy!! I can relate to your wanting and enjoying spreading the news! I have a group text I send with my updates to friends. My Daughter always attends the scan result appointments along with my DH. My son is a Dallas Police Officer and his schedule does not allow him to attend these appointments, so he is the first one I call. I have been stable since I went on CMF last November. Hoping for another good report and 3 more months of stability.
Julie
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